[Mark Cox]

Just following up on my last comments. I too have had the back pains combined neuropathy pains all leading to epidural’s, cortisone shots and over the counter pain relievers and finally degenerative back surgery just 3 weeks ago. With that said I must strongly note one comment I’ve expressed to all my Doctors throughout these procedures….

Myasthenia Gravis without a doubt exacerbates any and all current and pre-existing pains. “Or at least in my experience”

I’m 63 years old and have had MG a little over two years now and my pre-existing pains such as my back and neuropathy pains became much more noticeable and painful in these past two years.

I finally had Back surgery just three weeks ago and it has taken a lot of pain and numbness out of my neuropathy related issues already… meaning there are other pain related ripples and variables besides just blaming on it on MG but I strongly believe that MG itself has been a main contributor to my increased pains for the last two years…

Another concern for MG patients I would like to point out is Back surgery or any surgeries for that matter….. Anesthesia and MG do not get along well and we need to make sure our Anesthesiologist, neurologist and surgeons know that we have MG. I was lucky in my case and my neurologist, surgeon and Anesthesiologist teamed up before my back surgery. Even with them taking all the precautions of weight loss to proper BMI, getting cardio, cholesterol and blood pressure in line on.top of administering less anesthesia and a IVIG infusion the day before surgery and two more days after surgery, I still have had a rough time pulling through this surgery. It’s only been 3-weeks but I have my full blown MG back with all the double vision, swallowing, muscle weakness etc. I was in great shape with none of these symptoms before the surgery… Just two nights ago, I had an emergency surgery to remove an obstruction from my esophagus after having severe swallowing issues for the past two weeks after surgery. Best guess from my neurologist is full blown MG symptoms combined with strong pain meds for my back was weakening my esophagus muscles from doing its job properly and not pushing food through. I’m now on a liquid diet until my MG systems level out..Today I passed out easily 3 times while removing stitches…?

I had a similar back surgery 5 years ago from the same doctor and same hospital and didn’t experienced near the pain and other issues I’m experiencing from this one. Note, I wouldn’t change anything, just saying your surgeries with MG may be different than any of those you’ve had in the past and you should explore and prepare for all procedures with all your doctors…

Sorry I got of track a little as this last part should be used for another topic for another time but feel MG patients must be more informed of risk related to surgery, pain medications and anesthesia…

Back to the original topic, I really believe from my own experience that the current and pre-existing pains us MG patients experience are moderately to highly exacerbated from MG itself…

Hope this information helps someone and only my two cents…

Mark

[Mark Cox]

I’m 63 and had MG for 2 1/2 years now. First Mederna shot went very well, 2nd Maderna shot I didn’t feel well after. Within a week my eyes started drooping and hard to chew my food and lost all my strength during pheasant hunting trip and had to leave early. When I arrived back home 2-days later my eyes went to double vision when lifting a heavy object in my garage. Like every body else I had no clue what was going on starting with the eye doctor for double vision etc. After reading about my symptoms on the internet I diagnosed myself to about 4-5 disease possibilities.

I showed them to my primary doctor whom referred me to my now neurologist. 3 months later and a series of blood and MRI test I was diagnosed with full blown MG.

To cut to the chase it was probably coincidental of the 2nd Covid shot timing and having MG symptoms begin in the same week but there’s a place in the back of my mind that still feels they are related so in short I have no intentions of getting any further Covid booster related shots. I have never been diagnosed with Covid but lost my sense of smell about 18 months ago and still don’t have it back. I take elderberry vitamins daily and haven’t been sick for over a year. That’s petty good as my job requires much travel through airports, motels etc. My neurologist tells me they have seen a lot more neurological related patients show up in their office since Covid but has no opinion if MG and Covid could be related or not.

Please understand that my Covid shot experience is of my opinion only and just sharing my experience with the forum.

On an unrelated topic, I had a shingles shot last year that really threw me for a loop, was extremely sick and lost 20 lbs in a week plus most importantly I’ve learned that Anastasia is potentially dangerous on MG patients during surgery or other procedures. I’m having back surgery in a week and for a cautionary step to prevent the possibility of an MG crises during surgery, they will be giving me an IVIG infusion the day before and the day after surgery…

Hopefully in time and by sharing our experiences, we’ll all be much more informed about MG..Hope this helps..

[Mark Cox]

I use J.R. Watkins Pain Relieving Liniment Spray with Menthol and Camphor, Voltaren and Salonpas patches work best for my back pains and other MG related pains. All over the counter or Amazon.. All 3 will give 3-4 hours of relief. Hope that helps..

[Mark Cox]

I’m 63 years old and have had very similar back issues as described in about everyone’s reply. I’ve been through all the cortisone epidurals, ablations etc. with no avail. Nothing is broken just a little arthritis and degenerative concerns.. I’ve had MG a little over 2 years and if I’ve noticed anything about my pre-existing back pains and neuropathy is that MG has magnified or exacerbated both of them substantially plus the additional body pains especially during colds spells. I can’t stand long either and stay in the car while my wife shops etc. I too have blurry vision and have changed eye glass prescriptions 7 times this year chasing it downwards in which no one has been able to explain other than blaming it on MG. I’m on Vyvgart and plenty of oral MG pills to cope with MG..

I guess similar to Forest Gumps comment…MG is also like a box of chocolates, ya never know what you’re going to get… In short there are plenty of unexplainables with MG. Keep fighting for yourself and your family and hopefully they’ll come up with better meds, explanations and solutions for MG in the interim…

[Mark Cox]

I’m a 63 year old male always seemed to enjoy a great memory, I’m entering my 2nd year since being diagnosed with MG and definitely experiencing memory loss/brain fog as more time goes by. Not sure if it’s related to my MG or the medications associated in treating MG. No family related dementia history to lean back on…. My memory loss seems to come and go. It Can be great for a day or two and sometimes a week or two and then challenging for a week or two. I’m in the middle of my 4 week infusion cycle while I write this and find it much more noticeable during my infusion cycles. It makes it very challenging and concerning to continue employment with the high expectations of my job responsibilities. Is anyone else with MG experiencing similar symptoms while coping through MG and if so, does it seem to be more related to the MG illness or the MG medications…? Or possibly from the combination of both..?

Thanks

[Mark Cox]

63 years old on Vyvgart and a hand full of MG related pills and continue struggling with blurred vision and respiratory short of breath issues. Had MG for 2+ years now… Take oxygen as needed and on 7th pair of eye glass prescription this year. Eyes we’re both excellent before MG and respiratory was normal..

[Mark Cox]

Yes I have fallen several times since I was diagnosed with MG two years ago, even was sent to the hospital after knocking myself out during a fall hitting my head on some cement stair steps I was coming down.

I’m 63 and was very active in pro motorcycling events where balance was key to the sport and took pride in my sense of balance but since MG I have fell over on motorcycles and bicycles while stationary in place. I can no longer close my eyes while taking a shower washing the soap away from my eyes without holding on to a safety bar or something stationary or I will fall. I have a hard time walking down rocky or rutted roads in addition to maneuvering myself up and down stairs while trying to maintain my balance without falling…

In short, I feel I have lost a majority of my equilibrium since MG. Hope that helps.

Mark

[Mark Cox]

Having been diagnosed with MG for over two years now at the age of 63… Respiratory and fatigue don’t seem to respond to Vyvgart like I would hope. I am taking vitamins to support the Fatigue but respiratory has worsened over the last two years. I have changed eye glass prescriptions 7 times this year as it continues to rapidly fail in the right eye and some in the left eye. Been to several optometrist and all relate it to possible MG related symptoms as they checked me for everything else. Lastly, I must say that my Vyvgart works great for everything else as I have all the MG symptoms but it does begin to run down at 45 days in my 50 day cycle and the swallowing, eye flickering and fatigue start setting back in around 45 days. My neurologist says several others are experiencing the same cycle issues but at the high expense of Vyvgart the insurance companies are pushing back on more frequent infusion cycles…

Hope that helps…

[Mark Cox]

I’ve had MG of two years now with all the symptoms unless I’m on my Vyvgart infusions. I too have severe muscle spasms of my hands, fingers and leg muscle cramps . I have been taking fairly large doses of magnesium for several years and have not experienced any noticeable adverse symptoms since I was diagnosed with MG. Weather/heat and elevations/Height seems to be my most common nemesis to my MG… Still a lot of unknowns and magnesium may catch up with me long term. I’ve changed eye glass prescriptions 7 times this year but an unrelated MG topic for another time.. Hope that helps..

[Mark Cox]

I’m 62 years old and on 240 mg Pyridostigmine combined with 200 mg of azthroziaprine along with Vyvgart infusions. Seems like high doses compared to the other replies. But in short I have had no side effects for over a year now. But…I have changed eye glass prescriptions 4 times in less than a year getting progressively worse in both eyes for distance but don’t need my reading glasses after 15 years of use. My Neurologist and optometrist are still trying to figure that one out. If it’s an allergic reactions related to any meds above, I’ll pass it on in a later review and appreciate reading everyone else’s responses.

[Mark Cox]

I’m 62 and Like most my MG started out with double vision a year ago and I used the pixel glasses for a short period until the Vyvgart kicked in to clear my double vision.

My concern now is that my vision has changed 4 times in the last 9 months mostly In the right eye mostly which includes new prescription eye glasses each time and getting expensive.

Crazy enough, I’m typing this without readers during this current change which is a first in a long time without readers but concerned what comes next…I’ve been seeing two optometrist and both are baffled thinking it has to be related to the MG in some way as there are little or no signs of other causes.
Don’t know if there are any medical procedures for this other than new eye glass prescriptions each time but if it turns into more of a surgical matter I will share it later…

[Mark Cox]

I’m 62 and was diagnosed 1 year ago with full blown MG symptoms that all exposed themselves over a two week period..

After 3 months of trying to find a a doctor to fully diagnose my MG, they started me out first on an IVIG of <span class=”s1″>Gamunex that work very well for me compared to Vyvgart. I Felt much stronger and less anxious from Gamunex but we couldn’t control the severe migraine side effects from the </span><span class=”s1″>Gamunex and it consisted of 3- daily infusions at the end of every 30 days.

Due to my job travels and working around 30 day infusions, I became more attracted to Vyvgart infusions on every 60 day intervals. Turns out most my MG symptoms was returning in 40-45 days so we moved it to every 50 days and all my neurologist will allow for now. I’ve also notice that I pick up colds and flu’s easier in that same 40 – 50 day period and learning to stay away from the public and travels during that time.

</span>

I have experienced both respiratory and infections symptoms that may be related to Vyvgart and have stayed in the hospital overnight twice in the past  9 months due to low oxygen levels when staying at my cabin at 7000’ elevation in Utah and I was put on home oxygen as needed which is mostly at night around any high elevations such as my cabin… My respiratory concerns also initiated a move out of our home in Utah County at 5500 ft elevation to less than 1000 ‘ foot elevation in Nevada. I don’t require any oxygen at this level unless I’m fighting a cold etc.

I also had a knee operation over a year ago still struggling to get the superficial wounds on top to heal, other wounds are noticeably taking much longer to heal. I had a foot rash infection Around my ankle about 6 months ago that I’ve never had before and cleared it up quickly with a prescription and over the counter medication.

To be Fair, I cannot attribute any of this to Vyvgart itself because my doctor wasn’t sure what is causing these issues either and as he mentioned a lot of these things could be directly related to just MG itself not to mention I’m no spring chicken at 62 years old.

All that I can really share is that I haven’t had any of these type of issues since the last nine months and Vyvgart is the only change during this period other than my MG itself.

On a positive note, Vyvgart has been a game changer for me as well and I’d much rather be on Vyvgart and deal with a few side effects versus dealing with all the challenges of MG without any treatments and would highly recommend Vyvgart to anyone from my experience. Just sharing my two cents if it  lends value to your question and anyone else’s experiences…
<p class=”p1″>Best of luck with your Vyvgart treatments…!</p>

[Mark Cox]

I’m 62 years old and I’ve only had MG a year now with all major symptoms via double vision, chewing, respiratory, speech and strength loss etc. I was in relatively good physical shape a year ago but my physical and some of my mental speech and concentration health have been affected. I Am a VP product line manager in the oilfield that requires 24/7 on call duty with a lot of traveling to inter-company districts and oil field rig locations. Without my Vyvgart Treatments, none of this would be possible. It’s still hard to dress in a hard hat, coveralls and steel toe boots to even walk across an oilfield location let alone walking up on the 30 foot rig floors. Even getting through the airports are difficult and use a cane or request a ride on their carts. I attended many operational meetings internationally and externally with clients and find my ability to concentrate or follow conversations can sometimes be difficult. The hardest part is sometimes finding the words or the embarrassment in mispronouncing common financial or industry words and terminology.. I find myself writing more emails to avoid verbal conversations due to this. Like most with a rare disease, I hope and pray that I can retain my employment at least until the age of retirement. I conduct a lot of blowout training with new people to the industry and on the drilling rigs and that feel I have a lot of experience and knowledge to give back to the industry. Keeping my wages and insurance are very important but I also seem to have stronger sense of still feeling useful and productive while managing through my MG. During my Vyvgart cycles, I have to manage my travels around my Wei infusions and actually have been infused in different states such as North Dakota that would allow. Some states do not allow this such as Nevada without a prescription from a Nevada Physician which can be very difficult as I have experienced.
In Short, MG has been a Game Changer to my employment and usually don’t share that I do have a rears disease such as MG probably because I’m too proud to accept preferential treatment.. This is just my experience in a short time and hope can relate to others experiencing similar employment type challenges with MG.

[Mark Cox]

I’m a 62 year old male and was finally diagnosed with MG about a year ago after experiencing some of the normal Vision, muscle weakness and swallowing issues and seems I have developed all the MG symptoms since but the most concerning or most noticeable symptoms are my breathing and muscle weakness’s… I still travel a lot for my job and walking through airports are a nightmare and usually sweating and out of breath by the time I reach my terminal.

My breathing symptoms are very similar to yours and I’ve even relocated out of the Rockies to lower elevation to help with my breathing in addition to using oxygen on bad nights.. I’m a non smoker but was being treated for COPD for the last 10 years after ruling out allergies, asthma, chest X-rays and other respiratory symptoms… About 18 months ago, my breathing was getting worse so I went to a specialty respiratory clinic for my breathing disorders and the Doctor there told me that I definitely have some sort of breathing issues but it was not COPD. He gave me some different inhalers and sent me on my way…  Six months later I ended up at my neurologist doctor that diagnosed me with MG and was fairly confident that my breathing issues are definitely related to my MG.. Shortly after that,  I ended in the Hospital with my oxygen levels down between 79-82. They brought me back up into the 90’s overnight with oxygen but I have been using oxygen at nights since and using portable tanks in higher elevations visiting my kids…

Hope that helps..

Mark

[Mark Cox]

I’m 62 and have only had MG a year now and was diagnosed with the majority of MG symptoms so I have seen many doctors in a short time but overall it still feels like being just another sheep in the band-aid lines with most of the medical professionals that I’ve come in contact with… The medical field as a whole still doesn’t know or understand a lot about MG as it is a rare disease but it’s also been around a very long time in several countries for the few that’ have had it throughout these periods… As more people are diagnosed with MG, it appears we have seen more medical transparency and research progress in just the last 5 – 10 years alone and appears they are getting better and closer all the time…

It also should be noted that MG comes with several related ripple effect type symptoms that require many other medical related services besides your Neurologist and family doctor… Most of them might have heard of MG but still can’t spell it yet sort of speak… They all try to do the best they can based off their medical specialties and their limited knowledge of MG.

So far it seems like there are no long term remedies from these specialty Doctors and feels like they’re just applying another band-aid fix in the battle of the MG war… In other  words their specialty services are all they can provide until they find a cure for MG itself. Not to mention that most good Doctors are in very high demand and too overloaded to find time to broaden their knowledge and provide quality patient time and services…

As Covid winds down, I would hope that those doctors that departed from the medical profession during Peak Covid will return soon along with those still working can catch their breath to lend better quality time to research and providing better quality and productive time with their patients.

Through the rapid journey to develop a vaccine for Covid, the medical field should have learned a lot more about autoimmune symptoms and related type diseases. I sincerely Hope that with Gods speed it will generate better knowledge and medical options to better pursue a cure for MG, MS, ALS and other autoimmune related diseases… Just not sure MG has enough transparency yet to qualify for “Warp Speed” vaccination at this juncture and glad they’re taking their time to get the cures for MG right without all the side effects… Just my Two Cents…

Mark

[Mark Cox]

“It’s always something”

[Mark Cox]

Challenging, Unpredictable and Humbling

“ Just Another way to say Wack-A- Mole”

[Mark Cox]

Sorry bud but you seriously need to get a second or third opinion, I’m 62 and have had full blown MG for over a year now with mostly the exact symptoms that you are experiencing… Took 3 months, several doctors and test to narrow mine down to MG… Best of luck finding the right doctor to narrow it down to MG or some of the similar type of diseases related so they can get you on the right medications to ease your symptoms…

Mark

[Mark Cox]

Yes, it took multiple blood test to finally narrow my diagnosis down to MG… Along with cat scans, multiple MRI’s to isolate possibilities of damaged eye muscle issues, Thymus and other diagnosis possibilities. Just a note of interest when I went to the second eye specialist for blurry vision, he let me know that he couldn’t find anything in the eye exams or MRI’s to cause my blurry vision but did ask if I had any Thymus issues… ? Of course I didn’t know what the thymus was at the time and asked what does that have to do with my blurry vision? He replied with awe just wondering. After being diagnosed for MG, I went back to him months later for prism glasses for my double vision, I asked him if he suspected MG and was and the reasoning for asking me about my Thymus… He said yes, I suspected MG or something similar but I’m just an eye doctor and it’s not my place to scare patients by diagnosing issues outside of my field…?

But as to your question, there seems to be many close illnesses similar to MG and a series of test to accurately isolate each down to MG but the last two of many blood test were the final contributors to my diagnosis… Hope that helps a little as everyones body and their doctors approach to MG may be different.

[Mark Cox]

My MG took 3 1/2 months to diagnose starting with blurred vision at the eye doctors, then a specialist eye doctor, then to a respiratory doctor for an upgraded respiratory inhaler for my breathing issues etc. Finally I pretty much diagnosed my self by searching the internet. I was somewhere between MG, ALS, MS, AIDS and a couple other close symptomatic immune symptoms but I was 10 for 10 on MG symptoms and asked my family doctor to refer me to a neurologist. My family doctor had not heard of MG before but agreed a neurologist would be a good start? After multiple MRI’s, Cat scans and blood test, my neurologist narrowed it down to MG and began my Vyvgart treatments 9 months ago. It was a very tough three months driving back and forth to the doctors with blurry vision and all the other MG symptoms always expecting the worst and hoping for the best outcome .. I may be getting off track but mine also came on shortly after my first Covid shot but that’s another rabbit trail. In short I hope technology gets better at diagnosing and preventing diseases such as MG and Hope even more that they find a permanent cure soon…

[Mark Cox]

I’m 62 years old, male and still struggling with Vycart compared to Gamunex. I rapidly had about every MG system come on in October last year for the first time i.e. Double vision, chewing, eye drooping, fatigue and respiratory issues etc. Like most it took 2-3 months to fully diagnose MG after Eye doctors and everyone else… After being diagnosed with MG, They started me out with the 5- infusions of Gamunex for five straight days, everything came back strong except respiratory one some fatigue… But I Had severe migraine headaches and that was my only side affect but the headache were really bad so we considered Vyvgart in addition to the longer periods in n between infusions … I’ve had the 3- initial Vyvgart infusions 45 days ago and that was 30 days after the Gamunex infusions ran out…

Vyvgart started out with the same migraine headaches but slowed down a little in the last couple weeks with mild headaches, I’ve had anxiety from the beginning of Vyvgart like I’ve just drank 3- cups of strong coffee all day, upset stomach the entire time but may be due to all the other MG meds I’m on… 35 days into Vyvgart I’ve started getting rashes on both my feet that are Vyvgart related as per Dr. Appointment yesterday. Using meds and over the counter ani-fungal medication… Double vision has been coming back with drooping eyelids off and on daily and fatigue more noticeable lately… Overexertion will also trigger both eye issues and respiratory that also  just came on lately…

You must  wait a minimum of 50 days in between Vyvgart infusions and feels like I’m running down premature of the 50 days with the recent eye and fatigue issues…

I am going to try one more dose of Vyvgart in 5 days but may be going back to Gamunex and finding a way to deal with the migraines based on my initial experiences…

I fully understand Everyone’s bodies and symptoms are different so please don’t base using  Vyvgart on my experience, just sharing my recent experience using Vyvgart with the form…

Mark

[Mark Cox]

Thank you, I have not tried Tonic water without the alcohol for muscle cramps, I think I’ve tried about everything else such as Bananas, pickle juice, dark chocolate and others, the only thing that seems to work best is magnesium mixed with potassium. My doses have gotten higher as the years go by and cramps spread. I’ll give the Tonic water a shot. If it works for my cramps and I feel any improvements with my MG, I’ll certainly share the results with this forum.

kind Regards,

Mark